Monday, August 30, 2010

Jasmine is now officially 5. She is very pleased about this and is announcing it to everyone she sees. She definitely feels older and is wondering why she can't start school this week. We had a fun birthday day last Thursday with lots of hoola hooping and homemade pizza for dinner, and a little party on Saturday with our families and a few friends - and of course the lolly man.

Hoola hooping on birthday morning

Modelling new Mama-made sundress

Check out my cool birthday cake!

Lolly man in full flight.

Lucy also had fun at the birthday celebrations, and enjoyed squishing cake in her little hands. We are hoping to only have to go to the hospital once this week for a check up. She's been waking up a bit at night lately which is very unlike her - she seems to still be uncomfortable when she passes wind or opens her bowels which is happening a lot thru the night. Poor bloss, not very nice. But otherwise she's great! The next round of chemo starts next Monday, and in a funny way having been at home for most of this cycle has made it feel very long!

Today we visited my Grandma - Lucy and the girls' great grandma. Her name is Elma, but all the great grandchildren have gone through phases of calling her Elmo, which was Madeline today! Poor Grandma is struggling with deteriorating eyesight and her hearing has always been poor. But she loved seeing Lucy and Madeline, especially enjoying Lucy's smiles and clapping which she turned on beautifully. Lucy has inherited Grandma's blue blue eyes, and they always remind me of her. It was amazing to see Lucy's pudgy little baby hands held Grandma's 96 year old hands. Grandma always says things like "it's good for me that you come and visit, not so good for you". Although it's hard to see this lady that I have known and loved all my life growing older and more frail, to see her is also a testimony to God's grace, and I love that our children have been able to meet her. It is indeed good for me (and them) to see her. And it's a wonderful privilege to know that a short visit from us makes such a huge impact on her life and I wish I could do it more.

Wednesday, August 25, 2010

I'm not a very good gardener. As we don't own the home we live in, there's not much incentive to get into it either, and I'm not great with pots. Just too much maintenance involved. But I grew these!

Well they grew themselves really. I just popped the bulbs in the pot and left them outside where they could catch some rain and sun, and in a few short months they sprouted and this week have lifted their sunny faces to the sky. I smile every time I see them. They are just on our back porch, so I see them every time I come home, which is where we've continued to be this week. We've had a couple of days staying at home all day too, which has been good for me, although perhaps a little less exciting than Madeline would have liked.

We have had a few visitors though - it was great to catch up with lovely Karen McK yesterday, and to meet a new friend Julia and 2 of her 4 boys today. Her littlest one has down syndrome, and it was lovely to meet him too. A birthday lunch on Sunday, and time with Mum on Monday rounds out our week so far.

Here are a few pics of Lucy from today - I feel like every time I look at her she's getting bigger - no worries yet with her losing weight!

And here is Jasmine modelling my new laptop bag. I'm loving it a whole lot... It's padded to protect the computer, especially as I drag it to the hospital and back when we're in. Till now it's been in a very unstylish shopping bag, and is now very much enjoying it's new home.

It's Jasmine's 5th birthday tomorrow. I have just finished off a little dress for her, which she will no doubt want to wear no matter how inappropriate it is for the weather. Oh well. We have lots of pairs of tights at the ready. I've ordered a couple of things online for her that haven't arrived yet - I'm hoping for a bumper post delivery tomorrow! We're back at the clinic tomorrow morning, then hoping to visit Early Ed as well, so a busy day ahead. I didn't realised that Emma had school photos today - she went to school in her sports uniform. How embarrassing! She didn't appear at all concerned, but I'm feeling pretty embarrassed. I didn't actually forget, I was just convinced that the photos were being done on Thursday not Wednesday. Oh well. Everyone seems to have coped ok, and it sounds like Emma is just standing with the boys in the class photo.....

Sunday, August 22, 2010

Well we are still at home and Lucy is well!!

The doctor even suggested on Friday that perhaps her blood levels wont completely bottom out this round at all, considering that as of then her neutrofils were still relatively high, haemoglobin stable and just platelets low. She had a transfusion on Friday and may need another one this week, but otherwise all is excellent. We are hoping for another hospital free week - well free from being an inpatient - just visiting the clinic as required to keep an eye on how things are progressing. Pray those fevers stay away!

My back is still sore, but having seen the chiropractor a few times it is starting to settle down. I'm trying to remember to flex/tense all the right muscles and to bend and move the right way. I must say that having a sore back makes me feel quite vulnerable and wobbly - both physically and emotionally. Have shed a few more tears this week than in the last little while, and had a good ol' cry meeting a new little bubba this morning. Not because I didn't want to meet him (and by the way he is gorgeous Neil and Kirrily!) but I suppose it just makes me think about childbirth and all that and brings back all those thoughts and feelings associated with Lucy's birth. Add in some back pain, a talk at church about suffering, God's care and deliverance in our suffering (as opposed to deliverance from suffering) and for me tears were just inevitable! Oh well....

This afternoon we enjoyed a relaxed birthday lunch for Adam's sister at the Burkes and now all the little ones are tucked up safe in bed. I've been trying to rustle up some energy to finish off a few little dresses I've been sewing for Jasmine and Madeline, but just can't do it. Think I shall go to bed instead. I've got 4 more days till Jasmine's birthday on Thursday when I really must have hers done! Hope you had a great weekend.

Wednesday, August 18, 2010

I'm glad to report that this week has been quite a normal week (so far!), if that's what we can call it.... I've cooked a bit (pear and rasberry bread in the oven as I type!), we've all slept in the same house for almost a week, I got to go to Bible study on Tuesday for the first time in ages, even got to sew a bit and make an incredibly stylish new laptop bag for trips to the hospital! Stories have been read, the trampoline jumped upon and dining table sat around. A few melt downs and tantrums to keep it real, and even a free dinner on Willoughby Council at the opening of the Spring Festival on Saturday night!

Lucy and I have been going to the oncology clinic for checkups and she is doing very well. No fevers in sight, and her counts are just starting to go down. It's likely she will need a platelet transfusion on Friday but otherwise everything is still pretty high. Today she has delightfully pink cheeks and nose which always draw many comments at the hospital. Once they know it's not because she's sick, it's all gooing over how cute she is! She certainly is a social little creature, protesting loudly when I don't position her pram where she can 'talk' to people like Donna on the desk at the clinic, or when everyone else at home has finished their meal and she gets left behind in her highchair in the dining room. She's also perfecting her throwing arm, and most toys are given the chuck from the highchair or pram.

My biggest struggle at the moment is with my back, which is still pretty sore. Am being held together by my trusty belt which I wear all the time (even to bed!). It's difficult to sit for any length of time and driving is quite uncomfortable. Lifting Lucy in and out of bed/the car/off the floor is pretty tricky so am trying to keep it all to a minimum. Hopefully it will get more stable soon, and I'll simply have to get back into strength exercises.

Friday, August 13, 2010

3 down, 3 to go!

We've made it home again having finished the 3rd round of chemo this morning. Lucy has again coped well with the treatment, a little off her food, but otherwise quite good. She was excited to come home and see her sisters today, and they were equally pleased to see her.

It's been a long week sharing the room at the hospital. The other baby in our room was quite unsettled especially at night, so that was a bit of a struggle - I think I mentioned that the other day. They got to go home on Thursday which was a surprise, but our new room mate after they left was a lovely 12 year old girl. Anyway, we're home now and it's good to be here!

Some of you know that since having all these lovely babies my back and pelvis has been quite sore for some time. I'd been seeing a chiropractor for a while before Lucy was diagnosed and had been making some great progress. Since Lucy has been sick though I haven't been able to go. I had been pleasantly surprised with how good my back was feeling considering all the sleeping on fold out beds, stress, lifting etc, but just this week my lower back has started to protest and is quite sore. Must try and make it back to see the chiro, as well as do some pilates and try to get strong again.....

I've been feeling a bit crazy this week - no doubt hormonally related but nonetheless unpleasant! It's felt a bit like we're a long way into this journey, but a long way from the end - just plodding through the middle. But each day and week and month is another closer to what we hope will be a full recovery.

I spoke with the consultant at the hospital today who was helpful in answering some of my questions. He was keen to remind me that Lucy's leukaemia and myelodysplasia were both caught very early and were very mild. The treatment she is receiving should fix both problems, and she is doing as well as could possibly be expected. All good things - great things to be very thankful for. Plus she's gorgeous and winning hearts everywhere! And tonight we're all home together.

Wednesday, August 11, 2010

Well we're in the middle of our current round of chemo and all is going pretty well. Lucy was looking a little hot and glassy eyed yesterday afternoon but today is doing fine. We are sharing a room again, this time with another 1 year old. It is both better and harder than the other experiences we've had of sharing. Better in that the two bubbas are quite interested in each other and can even play a little but, but harder in that our little room mate has been quite unsettled at night with lots of crying, and even in the day a fair bit of noise and squealing when Lucy is asleep. Going alright though - Lucy is a bit of a champion and able to sleep thru it all mostly. The other little girl has been on steroids and has been quite grumpy and unhappy - she has had a bit of pain and mucositis, and let's face it, being in hospital just isn't fun. She is very wary of the nurses and doesn't like anyone coming near her.

The room is very small and I've been feeling a bit all over the place, so it makes it a bit hard to hide! In God's kindness though somehow I have been able to have the energy to chat a bit and be alright around the other family. I nearly cried when I was shown to the room, wondering how I'd cope, but it's going ok. A new book I ordered a while ago arrived today so I've enjoyed having a look at that!

Thankfully Lucy has continued to be pretty happy and cope with most procedures well. She isn't bothered by the nurses or the doctors coming to do things, and we hope this continues!

We had some great news the other day - a while ago we all had tissue typing blood tests done to see if anyone is a potential donor for Lucy in the event that she needs a bone marrow transplant down the track. We found out recently that our little Madeline is a 100% match! Adam is also a 5/6 match which is pretty good. We hope that Lucy will never need a transplant, but in the event she does it is wonderful to know we have an exact match from a sibling which is the best case scenario!

Monday, August 9, 2010

(photo from June 2010)

Hello again! Thanks so much for a fantastic day yesterday at church with Lucy's baptism and a pot luck lunch afterwards. We were so encouraged to see so many people there, keen to support us all and pray with us for Lucy as we celebrated the victory Jesus won for her in his death and resurrection (as well as reaching her first birthday)! Photos will come soon - my sister in law was on the job yesterday but we haven't got them just yet, and I seem to have mislaid our camera somewhere....

Today we are back at the hospital for the next round of chemo. Lucy's blood test this morning showed a big jump in all her counts (except haemoglobin which was just a little bit up), so she was pronounced fit for more chemo. She had a small procedure this morning under general anaesthetic, where some chemo was injected into her spinal fluid via a lumbar puncture. She was a bit disoriented and distressed on coming out of the anaesthetic which may mean she came out of it a bit fast, which was a bit sad. She didn't seem to even recognise me for a while but when she calmed down and had some breakfast she came back to her old self again. We're now waiting to go up to the ward, and Lucy is having a snooze in the pram. Hopefully we wont have to spend the whole day here. I find it a bit overwhelming in the oncology clinic sometimes. Also hoping for a single room this time...

Anyway, thanks again for yesterday, and for your continued love and support and interest even if you weren't able to come. We appreciate you all very much.

Friday, August 6, 2010

Our little girl is 1, and we had a lovely day together. After Open Day at Emma's school we enjoyed afternoon tea with Nanna and Poppa, Grandma and Pa, Jen and Sophia, Nicola, Jonathan, Elizabeth and Isaac (thanks for the great cake Nic!). I'll let the pictures speak for themselves....

Wednesday, August 4, 2010

We're home! After nearly 11 days stuck in the hospital we were released earlier today. We have to go back on Friday for a check up, and probably next week be re-admitted for chemo, but the big news is that Lucy will be home for her birthday tomorrow!

We are excited to celebrate Lucy reaching the one year mark, and would like to invite you to help us! We have decided to have

Lucy's Baptism and 1st Birthday lunch

on Sunday 8 August 2010

at Naremburn Anglican Church

cnr Merrenburn Ave and Willoughby Rd, Naremburn

at 10am

with a pot luck lunch to follow at the church

We are keen to acknowledge all the help and involvement of so many people in Lucy and all of our lives especially in this last year. People have cooked, cleaned, prayed, talked, encouraged, cried, laughed, called, emailed, visited, babysat and much more. We are incredibly grateful for all of you! Most of all we are grateful for what God has done for Lucy in sending Jesus to die in her place. As well as wanting to celebrate her first year, we want to celebrate what Jesus has done for her, and all of us, and would love you to join us.

So, if you can and would like to, please join us on Sunday for what we trust will be a great time together. We really would love you to come!

If you can, please bring a plate of food to share for lunch.

Of course if Lucy spikes a fever in between now and then we will have to postpone, but hopefully we'll be good to go. I will confirm whether we're on on Saturday night.

Tuesday, August 3, 2010

Here are some photos from the weekend and last few days

Lucy on her favourite toy in the hospital

At nanna and poppa's place this afternoon

I just love this expression!

Neutrofils are on the rise! Today we had 0.1 (yes, a real 0.1) and we are hopeful that tomorrow morning, assuming there are no fevers overnight, we will get to go home!!! We had a gate pass today which meant we could spend the afternoon and evening at home with the girls which was great. Lucy has had a very happy day - lots of smiles, clapping and banging!

We even got a big surprise this morning when an old friend, who as far as I knew was living in New Zealand, popped in to see us. So great to see you Rachel and thanks for the groovy crab present for Lucy.

The best part of all this is that Lucy will be able to be home for her birthday! Not sure yet what that will look like, but at least it wont be in hospital!

Can't Sydney just be glorious in winter?! Yesterday was a gorgeous day, and I was all set to spend a day with Emma, Jasmine and Madeline going to church and then just hanging out together, starting some birthday preparations for our Little Miss (nearly) One Year Old. To my great surprise and joy Lucy got a gate pass from the hospital for the afternoon, and Adam brought her home for a couple of hours.

Everyone played at home - including Lucy who got to play outside on the new picnic rug - and I even got to start sewing some little things for Miss L as did Emma and Jasmine. All will be revealed later... Lucy even had to don a sunhat for her jaunt outdoors it was so sunny (and apparently chemo makes you sensitive to sunlight!). Just lovely. Sadly I left my camera at the hospital so I couldn't take any pictures! I then stayed up way too late continuing my sewing - so hard to stop when you're on a roll!

The reason Lucy got to go out was that all of a sudden her neutrofils popped up to 0.1. 0.2 is the magic number for being discharged, and though I was trying not to get my hopes up, I'm very disappointed that today they haven't reached 0.2. Just keep doing what we're doing is the conclusion of the doctors. Lets pray pray pray those neutrofils keep rising - at least so she gets home for her birthday on Thursday.

Emma and Jasmine are really missing Lucy - there were lots of tears when she had to return to the hospital yesterday, and lots of talking about her and how much they want her home. Emma woke up about 11.30pm all a bit sad, and eventually went back to sleep in my bed clutching her photo of Lucy. I forget sometimes that as well as being rather put out that Adam and I aren't around all the time, they really do miss Lucy, the little sister they love to bits, being around.